Rights of the Dying Child: Trieste Charter

In September, 2012, a group of professionals working with children affected by incurable illness launched a project, supported and promoted by the Maruzza Lefebvre D’Ovidio Foundation, to formulate a charter of rights for children approaching the end of their lives.



This draft was more recently revised by a larger group of 50 experts representative of a range of professional, institutional, and social figures (doctors, nurses, psychologists, philosophers, ethicists, parents, and journalists) at a consensus meeting held in Trieste, Italy.



The final version was approved and entitled the "Trieste Charter."  The rights of the dying child are

1. To be considered a person until death irrespective of age, location, illness, and care setting


2. To receive effective treatment for pain, and physical and psychological symptoms causing suffering through qualified, comprehensive, and continuous care


3. To be listened to and properly informed about his or her illness with consideration for his or her wishes, age, and ability to understand


4. To participate, on the basis of his or her abilities, values and wishes, in care choices about his or her life, illness, and death 


5. To express and, whenever possible, have his or her feelings, wishes, and expectations taken into account


6. To have his or her cultural, spiritual, and religious beliefs respected and receive spiritual care and support in accordance with his or her wishes and choices


7. To have a social and relational life suitable to his or her age, illness, and expectations


8. To be surrounded by family members and loved ones who are adequately supported and protected from the burden of the child’s illness


9. To be cared for in a setting appropriate for his or her age, needs, and wishes and that allows the proximity of the family


10. To have access to child-specific palliative-care programs that avoid futile or excessively burdensome practices and therapeutic abandonment

Notably, in the brief Lancet article that introduces the charter, the authors specifically observe the problem of medical futility:  "Sometimes, the people closest to them refuse to accept the negative progression of the disease and, consequently, do not recognize terminal illness and death as real and imminent issues to be addressed. As a result, these children are subjected to unrealistic decisions and treatment choices."